@windwalker what made (makes) you case unusual?

Hello! My case is unusual in that I have a genetic defect that Mayo does not understand. My lung lung function has been steadily dropping over the last 15 yrs without explanation and they don't know why. I am now at a scary 44% lung function. Was told that they have seen cases like mine suddenly plummet and will be in total lung failure. That is why I was pre-qualified last fall for a double lung transplant.

Did they test your Immune Function?

Jo Ann Kiemen

Not true! I have bronchiectasis /mycobacterium abscessus and I never had a lung problem and do not have a compromised immune system. My doctors say I am rare case at both Mayo and UH case medical center. I basically have no symptoms but have started the meds to hopefully stop it. 1 azithromycin, 2 iv cefoxitin, and 1iv amikacin.

@tutti Lisa, I don't have compromised immune system either. But, with bronchiectasis, both of us have compromised lungs. although I have not had any lung function problems either. Having bronchiectasis, which has no cure, means that we are susceptible to invasions of bacteria of various kind in our lungs. I'm not on any long term antibiotics and my conditions have not worsened since my initial diagnosis. For that reason, my pulmonary doctor and I have both agreed to put off drug treatment until/unless my conditions worsen. From reading everybody's posts on this forum, it is clear that people all have different physical conditions and our doctors don't necessarily agree with each other on how these diseases (brochiectasis, MAC, and other accompanying lung problems) should be dealt with. So it is very challenging for us as patients to make decisions on what is the best steps for improving/maintaining our own health, especially challenging because we all will have to live with bronchiectasis for the rest of our lives.

@windwalker Got it...and that's quite unfun...You can have one of mine but guessing you wouldn't want it...any news on date of transplant?

HELLO MODERATORS: HELP!!! Virtuous69 here. PLEASE REMOVE ALL MAC/MAI POSTS. CLOGGING MY EMAIL BY THE HUNDREDS. I;m having trouble staying up with the Chronic Pain Discussion Panel where I originally signed up. Thanks so much.

@virtuous Here is how you can stop the email notifications from this group from coming to your inbos:
1. Click on the View and Reply button of any of the emails from this group to get to the web site.
2. Scroll up to the top of the page and click on the down arrow next to the little person image in a circle.
3. Select Account Settings, then scroll down the page to find Email Notifications section.
4. Click on the + sign (Edit) next to Groups. Find the group you want the emails to stop. It is probably MAC & Brochiectasis.
5. Click on the down arrow to the right of the group name and select "Unfollow. Do not notify me anymore."
6. Scroll all the way down to the bottom of the page and click Save button.
This should stop the subsequent emails from this particular group from going to your Inbox. Hope this helps.

Hello Lisa. You have been lucky up to this point to not have lung issues from Bronch/mac. You may very well be one of the lucky ones who can be totally converted. National Jewish Health has stated that they have a few people that they were able to completely cure them. But, it has to be caught early.

Hello Robyn! It is recommended also that after you have raised the temp to 130 degrees on your hot water tank; to then turn on faucets in each room and let them run at least five minutes to scold the pipes and faucets too.